Aaron's Day

Aaron is 2yrs old and receiving treatment for
Stage 4 High Risk Neuroblastoma
(1)

15/06/2024

They are inseparable little buddies 😍

09/06/2024

Finally home after a busy weekend. Getting ready for school tomorrow 😁 Our space has some things missing but we love our home and in the coming weeks we will have a couch, rugs and play area sorted. Almost moved out of Ronald McDonald House. Packing up the chaos of the last 18 months stirs something in me I can't quite explain. One thing I am certain of though is the gratitude I have that I didn't have to do it all without Aaron. He is still here we have one more planned stay at Ronnie's for the end of the month after I've packed and moved out our stuff. It will be nice leaving for hopefully the last time with a lighter load and both my babies.

05/06/2024

Went to Subway Australia and ordered just bread 😂

29/05/2024

On our way for a day at the hospital I don't really want to do 😔 He is so happy. He had play group at his sisters school yesterday with a fire drill and a good night's rest.
He eats about 3 or 4 jam sandwiches a day, yoghurt twice a day, banana, apples, chicken nuggets, pies and sausage rolls, pasta and noodles, ham, eggs, and chips with Pringles the favourite... the list so far and it only increases. I don't want to go backwards. This is the best he has been in so long 🥹

23/05/2024

Little Picasso 🎨

Tomorrow Aaron has a kidney function blood test (GFR) and his Oncologist called me this afternoon to advise they would also like to do a PET scan. He recently had a Dotatate PET scan so this is just using a different injection. Supposed to be more sensitive to lighting things up.

The reason they gave for wanting this is to monitor his response to the Lutate radiation he commences on the 30th. If they were to use the Dotatate PET scan it can sometimes light things up more post treatment so it won't be able to give an accurate assessment of his response to treatment. The PET scan will then be used if it does light up for this purpose.

So this cheeky monkey butt has to fast from 8.30am until about 2pm thankfully by 1.30pm he should be sound asleep having his scan.

21/05/2024

I signed consent forms today for Lutate to start on the 30th May.

Part of me didn't want to because he is looking so well and has his appetite back. We go ahead and complete the protocol with this treatment because out of all the options for the radiation component this is the best fit for Aaron's circumstances and tumour markers.

Results of his MIBG scan looked the same and his Dotatate scan suggested some decreased uptake in some places and some increased uptake in others. The best news being that there are no new areas seen on either scan.

Expected side effects from this treatment are suggested to be minimal. There is potential for his platelets to drop, the specialist says he doesn't expect his counts to drop or for him to be immunocompromised yet the Oncologist has suggested that it is good that we have a spare bag of stem cells in case he needs them for count recovery. Mixed messages and alot of unknown has been the basis of my hesitancy with this treatment.

17/05/2024

Aaron and Ella are watching Wednesday on Netflix. Aaron said mummy I love her, she come my house because I love her she a beauty 😅

Don't know where he gets this stuff from. Ella laying next to him giggling. This is what we have been missing ❤️

09/05/2024

Tomorrow is MiBG scan day. Early start means early finish 😁
Hoping for an uneventful day. Will have to see if I can get some new pictures of him wrapped up like a burrito to check how much he has grown 🧐

Results of these scans don't really change the plan going ahead. More chats with Nuclear Med Specialist about Lutate Radiation.

09/05/2024

Afternoon breakfast The Coffee Club

Eggs, Toast and Tea 😋

29/04/2024

Big boy in the chair today 😄 he finished immunotherapy yesterday 🎉

Talking with the Lutate radiation people today to see what the next steps look like.

23/04/2024

We have a date for Aaron's next MIBG scan. Not long of a wait 😊 9th May

14/04/2024

Sissy was kissing lizards 🤣

13/04/2024

Count down until discharged.

No more Dinatuximab 🎉
These ten days in hospital have been very busy since it was school holidays and Ella stayed with us. Thank goodness for Nanny!

Not many updates because it's been go go go. Aaron has continued eating throughout this round and pain was nowhere near other times.
We have a lot going on at home over the next few weeks but we will be impatiently waiting for rescan dates and info for Lutate radiation.

Aaron has one more two weeks of Isotretinoin then probably within two weeks after that he will be doing his PET scan.

https://www.mycause.com.au/p/342660/aaron-finishes-treatment-family-need-a-car?menu=open

07/04/2024

Watching Skye on
Mumma used to work with Skye. This woman is a total weapon. Doing your boys proud lil Mumma. Aaron and Ella are both on my lap watching in awe

I'm A Celebrity Get Me Out Of Here Australia

04/04/2024

Aaron is on 5C waiting for a room for his last planned hospital admission for treatment!

23/03/2024

We have a challenge for our friends and community! 😊

Aaron's last planned hospital stay finishes up 14th April. We will be at home from this date. The goal is to have a family vehicle waiting for him on discharge so we can ditch public transport and manage our new home life, medical appointments and catch up on missed adventures.

I have tried getting finance for a vehicle but my affordability was borderline. Managing costs at 3 households - Ronald McDonald House, our "old" house that we barely stayed 3 weeks at in total during this time and Ella's needs with her Aunty.

Even getting back to just one household the costs are going to be similar as we have only just started to get to know what it's like living outside of the hospital. Often since the beginning of treatment until the last 2/3 months Aaron wouldn't spend more than 8 days as an outpatient with the most being about 3 weeks on two occasions since Dec 2022.

Share, donate, ideas for fundraising to make this happen is appreciated. We have reassessment scans after this next stay and radiation and then hopefully we will know what life looks like after cancer treatment.

04/03/2024

🪽Happy heavenly 4th Birthday Rosie
😇🪽

We saw your Mum and Dad delivering some things around the ward and they stopped and gave me an awesome car and these stretchy sticky squishies - My two favourite things 😁

Our angel friend who will always be remembered ❤️

28/02/2024

Admission day for round 4 of Immunotherapy
Aaron spent the full 3 weeks out of hospital without an admission. The first week out he teased going back in 3 times 😅

13kg
91cm (probably 89-90cm because he isn't able to be fully flat feet)
RAT Test done and now we wait...

Dressing change to come is not fun. Bloods. Oncologist review. Put up the PCA of Fentanyl then hooked up to Dinatuximab for 10days.

06/02/2024

Happy boy is having a night at home.

He has to be back for appointments on Thursday so is going to be really upset with me on the way back. The only problem is the first night he doesn't want to sleep because he is too busy enjoying being back in his own space.

04/02/2024

Dinatuximab round 3 is almost over 🫣

He is teasing a fever at the moment but Panadol knocked it down a little. Considering that and with his pain pump running until we stop his Dinatux we will stay overnight and get his line cares and dressing change done tomorrow morning instead of Tuesday and will likely have an appointment for some blood work later in the week to check his numbers out.

Getting close to the end of the protocol with only two more scheduled hospital stays in the coming weeks. We are both done with these hospital stays.

02/02/2024

I didn't get around to add Aaron onto this but here are some fellow Neuroblastoma friends.

30/01/2024

Aaron had music therapy this morning. He dragged the lady into his room when she was on her way to someone else 😅 and then he grabbed her hand on the way out and tried to make her stay 🤣

Physio and speech tomorrow hopefully 🤞

Day 5 of Dinatuximab almost done. Bag change this afternoon and hopefully start weaning off pain relief so tomorrow we can get his feeds back to normal and he is on track for discharge Sat/Sun

25/01/2024

Dinatuximab started last night. Pain has been a bit worse than other times but being managed with Fentanyl. He had a fair bit of fluid overload going on and last night his abdomen was very distended. Left his NG feeds at a lower rate overnight and this morning it isn't as big. Because his pain is being well managed he is as cheeky and playful as ever and has also been awake since 3am 😅

24/01/2024

Little buddy has surgery again tomorrow for his replacement central line.

Originally we were going to do this round of Dinatuximab with a PICC line and a cannula but there have been times where Aaron requires extra access in the past having been hooked up to TPN and requiring medications IV rather than down his NG tube as his absorption isn't the best.

Let's just hurry up and get these 10days started already. After this one there is only 2 more to go before radiation.

20/01/2024

The lengths I've gone to in order to try and get a urine sample 😅 He has zero interest in peeing on a frog 🐸

19/01/2024

It's a painful wait when they go in for surgery. It should be straight forward but he was really distressed going in. He was fighting them hard and it makes the wait even more hard for me. He will be coming out with cords removed from his chest and a PICC line in and a catheter in place.

18/01/2024

CVL is split. Emergency surgery required so he will be up on the board until they can squeeze him in. It will be removed and a temporary line put in before being able to put in another CVL. Had high hopes of it lasting the next three cycles of Immunotherapy but we have a staph infection and now a break so it's coming out.

So for the time being Aaron gets to fast until it's his turn.... Yay 😅

17/01/2024

Aaron got admitted yesterday afternoon with a fever. I knew it wasn't going to be good because he's been so well, no snot no fussiness that lead up to it.

He's come back positive for staph out of one of his central lines blood cultures. They are yet to know what strain it is but it will be delaying his Dinatuximab. A hospital stay that was meant to be just 10days is turning into something more. I just got my head around potentially ending treatment in a few months with him still having cancer but hopeful that he'd be having a bit more of a life at home and beginning to do normal things like potentially starting kindy to now fighting off staph before we can even look forward to that.

Overall he is a little tired and fevering. Going to be hit hard with Vancomycin so lots of rest ahead.

16/01/2024

Aaron's DOTATATE PET scan lit up like this so we have the go ahead for Lutate therapy which is an injected radiation carried directly to the tumour itself similar to MIBG therapy.

His MIBG scan has not shown anything new but also not any changes either from his previous scan. It is hoped that Lutate therapy will start turning off some of the lights that come up on his scans. This is also a treatment for his tumour being VIP secreting also so hopefully once completed our watch and wait period will be less poopy 😅

The mass in his neck mainly only lights up under DOTATATE PET Scan and not as avid in the MIBG scan. Not a great angle and would have been good to get comparative scans. 3 more Dinatuximab rounds to go. About to be admitted for the third now and two more to follow. Between now and then we will get details of ins and outs of Lutate therapy one option being a dose of radiation every two weeks 4-6 times I think or the other being twice but 8 weeks apart.

20/12/2023

💯

Address

Brisbane, QLD

Website

https://www.gofundme.com/f/q7ewj-aarons-cancer-journey?utm_source=customer&utm_medium=copy_link_all&utm_campaign=p_cp+sh

Alerts

Be the first to know and let us send you an email when Aaron's Day posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Videos

Aaron featuring as - Radioactive Thor running around the hallways 😅 Hulk is Thors best friend apparently 😁 #marvelstudios #marvelfans #marvel #thor #childhoodcancer #Neuroblastoma #radiation #lutate #hulk #superhero

He's had a good day resting and now eggs and toast. Happy vegemite 😋 #postradiation #lutate #Neuroblastoma #hungryhippo #childhoodcancer #radiation

Being happy siblings while mummy does chores #weekendvibes #Normal

They love when I make platters for their meals. The kids helped cook by cracking the eggs and putting the bacon in the pan :) I think it helps Aaron eat better when he has a choice of what to put on his plate, creates a little excitement and fun and it removes the stress from me when I pick up his finished plate and notice it's barely been touched... This is one of those moments where if you don't like something or it causes you stress you change your perspective. Aaron gets to choose what he wants to eat so has a sense of control over that and I get to feel joy at him putting things on his plate and eating eagerly rather than stress about what's left over or not touched. #breakfasttime #kidscooking #pickyeating #hungry #eggs #childhoodcancer #siblings

Dance party with sister and cousins in Area51 socks while we wait for our time slot. #birthdayparty #cousins #familytime #boogie

Aaron gets to come home. No more long stays for treatment ❤️ #cancertreatment #childhoodcancer #trauma #Neuroblastoma https://www.mycause.com.au/p/342660/aaron-finishes-treatment-family-need-a-car?menu=open

Aaron adventures. Only just keeping out of hospital but has had many visits during his week out. #moth #adventure #Neuroblastoma #immunotherapy #childhoodcancer

Getting a bit delirious now 🤣 #prank #nurses #cancerkids

That fasting face... Followed by some play time before surgery for his new central line. Keeping it in until after Lutate radiation so will hopefully last the next 5-6 months. We are hoping from now it's only a 10-11 night stay for Dinatuximab and then he can do his Isotretinoin as an outpatient. Will be looking at slowly moving out of Ronald McDonald House between these next two cycles. I want to be ready to be done. He has a rainbow cupcake and sausages to wake up to :) #surgery #centralline #immunotherapy #Neuroblastoma #champion

Getting Aaron's moulds done for his AFOs while he is still half sedated from his MIBG. All done 😁 He chose rainbow print for them and will have them in about a week. #orthotics #afos #mibgscan #neuroblastoma

Getting to know how to play the switch. Mum has no clue how to turn it into two player mode 😅 #NintendoSwitch #legomarvelsuperheroes #christmaspresents

Merry Christmas Everyone 🎁 2023 What a year! #hospital #ronaldmcdonaldhouse #lunch #oncology #Neuroblastoma #siblings #christmas #santaclaus #joy #blessings

Aaron having a little boogie this morning 🕺 Tomorrow he is having a fecal transplant which hopefully means a good reset to his gut health and gets him a step closer to eating solid food again. #dancemonkey #Neuroblastoma #childhoodcancer #dancebreak #edmmusic #fypシ゚ #dizzy #fecaltransplant #PooperScooper

Aaron is 3! Happy birthday little buddy. You are going to be spoilt for the rest of the week 🎁 #threenager #neuroblastomawarrior #childhoodcancer #hospitalcelebration

They want to starve him on purpose despite having extensive periods during treatment where he has been unable to eat/not interested in food for up to two weeks or even longer. They're even suggesting to put lemon juice or apple cider vinegar on my tits as if this is some imperative part of his treatment - starving him of all things normal and only administering nutrition via his veins or NG tube. Willingly affecting the supply of the only food source his body has tolerated during the toxicity of chemotherapy. They keep bringing it up as if I'm not complying with his needs. There is no acknowledgement of the trauma involved in this. How much of a psychological impact this has when the goal for months on end has been to make sure he eats as much as he can what ever he wants so long as he is eating. All to fix something that's supposedly the cause of an electrolyte imbalance that was acutely affected by his treatment on immunotherapy and the measures taken to correct an imbalance it caused which has had his numbers up and down ever since.

Let me be so damn wrong about my instincts right now. My smelly little dude doesn't look well. I was expecting an electrolyte imbalance but so far the numbers don't suggest that and they are good. Potassium is a little low but also the highest he has been in two weeks. Waiting on the team to check in with a plan but so far it's just get him on fluids and watch him.

At this stage the results of the ultrasound is that the lumps on his abdomen were just veins and visible due to his weight loss. I am not reassured by this as I had been changing his nappy hourly and not seen them before, I also have seen his body in many different stages even more skinny than he is currently and not seen anything like it. He also has ongoing issues with his calcium. For now they don't have to give any further medication to assist as it's holding just under 3.0 at around 2.8 - if further intervention is required they want to give Aaron a medication they typically give to people with osteoporosis to help get the calcium under control. Overall I think it has come to needing a discussion about what treatment looks like moving forward. Just another curve ball. #ihatecancer #Neuroblastoma #childhoodcancer #Hypercalcemia #highcalcium #cancerawareness

This afternoon's blood results showed the calcium had crept back up to 3.something and so he required another shot in the leg to bring it back down again. He gets a numbing cream on before they do it and it really doesn't work too well but because he spent a while with his eyes so puffy he couldn't see I told him that it's to make his eyes better. This afternoon I reminded him the same and despite crying he said "Thank You" to his lady. Not long after that he ended up vomiting up his evening meds and NG tube so needed a replacement. I let the nurses do their thing and went for a walk, when I came back I was told he cried for a minute but was really good for the whole thing and even said thank you to them. My little buddy is such a champion. We even managed to do a clean catch of urine in a jar. Earlier in the day the book ladies came by his room and gifted him a book from their collection and I got him this Fire Engine one. He loves it 🚒

Aaron came in to hospital Tuesday for weekly check in for bloods and dressing change. He ended up having Hypercalcaemia thanks to treatment for immunotherapy which had him taking Isotretinoin for the past 7 days of the 14 day cycle. As part of treatment to help level out the calcium levels in his blood he was given IV fluids rapidly which caused him to swell so bad he couldn't open his eyes. He slept all day yesterday (Wednesday) but now that he has had some other meds to level out his calcium and we've been able to drop the fluids he is on his way to his normal self. Thanks to fluid overload his electrolytes are out and we will be in for a few days. #Neuroblastoma #childhoodcancer #trauma #Hypercalcemia #fluid #stageIVneedsmore #immunotherapy #cancerawareness

Aaron getting his first package from his #Amazon #wishlist ☺️ Thank you to his Great Uncle and Aunty we are very greatful. Just look at that smile at the end. He knows how much it helps 😍 All these will help massively with his poo explosions 💥 timing of arrival was perfect 😅 https://www.amazon.com.au/hz/wishlist/ls/3AKMN3VJSV6SC?ref_=wl_share